A Woman's Journey With Rare Disease

The First Big Drop

I often say the wait for new lungs is much like being on a roller coaster. Kind of being suspended at the top, not knowing when the drops are coming or the loops. In suspension at the top, being scared out of your mind looking down below at how high up you are.

I’ve had a lot of adjusting to do this past year. I’ve had at least over 10 years of when I was feeling punk always having an explanation for it or something show up. I haven’t gotten many explanations the past year or so when I’ve had some dips and dives.

Thursday was no exception. I was just doing not so hot the past few weeks, my stamina and exercise tolerance had gone down and I was having some dips when I’d try exercises that even the week before I was doing fine with.

The final straw was when I went to get a glass of water in the kitchen. I dropped low even with my Niov at the highest setting. I rested and then about an hour later had to walk a few more feet to the bathroom and it happened again. I was frustrated so I had my bestie take me to the ER.

Luckily, my local lung doc was on call so she called my transplant doctor and I was transferred down. I got every swab known to man, my CT showed no pneumonia, blood clots, or collapses.

Hopefully breathing tests on Monday will yield more answers. The steroid is working so I’m moving air again but I’m still winded pretty good walking. We’ll see what happens. I’m just being honest with my team about what’s going on and letting them take the lead, but I know they are working to be sure we get my score adjusted and things moving a bit faster.

I have good support, another good friend has been with me since the transfer. I’ve been doing my best to update family and friends but I didn’t know a whole lot and I still don’t have a lot of information or energy to say much.

Just resting, taking a few walks to help my team help me and finding my way through. After the breathing tests, I’m sure there will be more info and a plan going forward.

But I’m glad I’m not having to work so hard just to breathe as I had been the past few days and intermittently the past few weeks. I feel safe being at my center and closer to my team.

I have worked ahead on my blog a little on some posts I did in my down time and scheduled for later so I can keep it updated a bit but not have pressure to write something if I’m not feeling good.